Another day, another migraine day. It’s the way it’s been for over 6 months now, and it’s been getting worse. How does 6 months of migraine get worse? The severity has been worse….much worse.
The new way to log your migraines now is with the “traffic light” system. With a GREEN migraine, yes you have pain and symptoms but you can still do what you need to do. YELLOW means you have limitations as to what you can do. RED means it stops you. You can’t do anything else buy exist with it.
I saw my migraine doctor virtually on Friday, Yes the same doctor who said she can’t do anything else for me and wants me to go to San Diego for treatment, she didn’t mention this during this last appointment. She saw how many RED days (17 in October) I’ve had this past few months and asked if I thought she should admit me for treatment. I reluctantly agreed. I really wish I hadn’t.
I arrived at the hospital just as shifts were changing. It was confusing and very overwhelming. The pain was high and because of COVID-19 everyone has to wear a mask which means I can’t see their face to read lips, it was horrible I was so glad that Stuart was able to stay longer than they said he would be able to. He answered questions for me, which is really hard on me. I’m the patient. I’m the one who needs to know things, but I couldn’t hear well enough to understand what was going on a lot of the time.
The migraine doctor gave orders for me to get DHE shots, only. She didn’t prescribe anything else. I could do that at home! I expected a
DHE (Dihyrdoergotamine) is given with an antiemetic, so you won’t get nauseous. They gave me compazine instead of promethazine (what I normally take). Compazine isn’t just an antiemetic it’s also an antipsychotic. Antipsychotics can cause akathisia. (a state of agitation, distress, and restlessness, you feel like you have to move ALL THE TIME) You may remember a few years ago when I took Latuda I had a terrible time with akathisia. Now if I take any antipsychotic I get akathisia. I am having a helluva time. I cannot be still. On top of it all, I’m having PTSD because of my past experience with this. I can’t do this much longer. I don’t know what to do.
We called my migraine doctor on Monday morning. Stuart talked to the triage nurse and she said she’d send the message to the doctor “Top Priority”. My doctor didn’t call back until today, it’s Wednesday. So I’ve had akathisia since Saturday!! We called my PCP after hours yesterday and Stuart talked with the doctor on call, he called in something that is supposed to help. I’ve had two doses so far and I’m still moving. I
t’s hard to sit still and write this. I’ve started it over many times over the last few days. I have a horrible migraine right now, I can’t walk around with this pounding in my head. I feel like I’m being tortured. I NEED to MOVE, but I can’t because the pain gets worse and I’m dizzy. Stuart is calling my psychiatrist to see what she suggest since she is more used to this class of drugs. I think the drug the doctor put me on last night might be working a little, but with this SEVERE migraine pain I can’t move as much I as NEED to because it makes the pain so much worse. It really is torture.
Cross fingers for me that this medication works. I can’t write any more. I’ll be back after I feel better. xoxo w
I saw the signs, I have so much going on, there are so many outside reasons….but I’m struggling….this is why I’ve been away so long, why my blog has been suffering, why I simply haven’t.
Today, I’m going to write, I have too much to write about, I am overwhelmed by how much I have to write about, but I need to…..
I didn’t expect to have vertigo almost all day the day before surgery.
I didn’t expect to have vertigo in the waiting room right before surgery.
I didn’t expect the intense pain after my surgery. During surgery the back injury that just got better was aggravated. I was not just dealing with surgery pain, the pain I expected, I was dealing with the back pain and severe sciatic pain. To make it worse, I couldn’t move to make the back and sciatic any better. I was stuck, in so much pain. We could not get this pain under control. I have issues with pain medication. Everything makes me hypersensitive, I feel like things are on me, it makes me itchy. So I was only prescribed Tylenol and Tramadol. This didn’t do it. They tried to put me on my side to help, this caused me so much pain I swear I wasn’t even in the room it was just pain. Luckily, it didn’t last long. I decided I’d rather itch. They tried Hydrocodone. nothing. I don’t know what all was tried. at 2am they tried Toradol, this is a NSAID given by IV or injection. I’ve had it for my migraines before. This finally worked. Probably in conjunction with everything else. I finally fell asleep. Only to be awoken at 4am to have my blood drawn. Then at 6am for something and at 7am because shifts changed….it was an exhausting. But I have to say, the night nurse who was trying to help me was absolutely wonderful, I couldn’t have asked for better care.
I didn’t expect to have low blood pressure, a magnesium deficiency, and have to stay another night.
I did get out of bed the first day and walk a little, I was told I did great. (the intense pain hadn’t started yet) I had my morning Physical Therapy on the second day and did well, even though I was a little dizzy. I didn’t expect to have a vertigo that afternoon. During my vertigo attack I had 3 different people come to work with me, including my Physical Therapist. No afternoon PT, no going home. They also had to make sure my pain was under control before I went home. It was better that night…but I had to sleep in a recliner, glad we bought one for me the right before I had my surgery. (ugly thing) I didn’t expect to HAVE to sleep in a chair for many nights after I got home. I didn’t expect to cry from the pain so much, after my surgery.
I didn’t expect my sister to come and help. I am very grateful. I didn’t expect it to be so hard for Stuart to stand back and allow someone to help. He said he’s just used to doing it, it’s hard to ask someone else to do things. Yep, I know that feeling. It’s very hard to ask others to do things. Especially, for me to ask for the little things. It’s hard to ask for things like something to drink, or a snack, to reach something for me, to get me a blanket if I’m cold….ect. Yep, I’m having a hard time asking for things too. I’ll ask for someone to go to the store, or do some laundry, things like that…..but it’s the little things that get me. It makes me feel so helpless. Eh…I guess I am. (I feel pretty weird having anyone other than Stuart do private things for me too…that is one of the hardest things I’ve had to deal with…one of the hardest)
I didn’t expect to have vertigo every day since my surgery.
I didn’t expect for Stuart to have to take off a second week from work. (I think he got in a little bit of work the second week…but not much.)
I didn’t expect…..
I didn’t expect to have a death in the family two days after my surgery. It was my extended family by marriage (my cousin’s daughter’s husband), I didn’t know him personally, but the circumstances of his death were hard….so very sad. He was young, in his late thirties. He was EMT on his way to work and pulled off and parked at a gas station, they found him slumped across the steering wheel dead. The autopsy has been inconclusive. There are still test out, but they don’t expect to find anything. They will probably have no idea why he died. They also found out a lot about him that his wife had no idea about, it is very, very sad. It also makes you think…..and think….
I didn’t expect for one of my father’s friends to die the next day. I knew him growing up. He worked with my father, they used to Barbeque (or barbecue in some parts) together. When I say Barbeque, I mean Southern Barbeque; a huge hog in a pit, slow roasted all night long….oh my it is good. We used to have picnics and things over at his farm. He let me touch my first cow, it was much softer than I thought it would be. He was 12 years younger than my father. As you get older you see more and more friends die, I wonder if my father is having a hard time with this? I’ve noticed he goes to a lot of funerals. That’s a subject that would be hard for me to broach with him.
I didn’t expect my friend Laurie from Hibernationnow’s Blog to die on April, 21st. She caught the flu in February and that just snowballed into more and more, she just got sicker and finally her body couldn’t take it any more and she died. I’m in complete in shock about her death. I keep looking for updates to her blog in my email. I look for her to chat with me on Facebook. I heard from her in some way nearly every day. It may not have been personally, but I always knew she was there. Now she’s not. Just like that….suddenly her voice is gone. Her thoughts are not in my life any more. Laurie fought fibromyalgia, she was quirky in ways and loved the color yellow, she loved the ocean, writing, and most of all her family. We were both foodies, and we both lost a dogs who left huge holes in our hearts, and later we both adopted rescue dogs who took over a new place in our hearts. The one thing we disagreed the most about was our feelings about the chef Alton Brown. She hated him, I love him…..it was quite a debate on one of her post! I will miss you Laurie. All the support and love you gave me, and our friendly banter. May you be pain-free in a nice warm place near the ocean taking a walk with your father.
I didn’t expect my dearest friend’s mother to die this week. She has been battling Amyotrophy Lateral Sclerosis (ALS, otherwise known as Lou Gehrig’s disease) for the past 9 months. I’m actually relieved she didn’t have to live in her body with her mind fully aware without being able to communicate with anyone for very long. I loved Kathy very much. I wanted so much to be there to help care for her. I wanted to be there for my friend and help her through this difficult time. Now I can’t be there for her again. The death of her mother is going to devastate my friend. She was closer to her than anyone. They talked daily. They were best friends. Her mother’s illness took a toll on the family. Yes, she will have a lot of people around her, but I know she needs her best friend. It is extremely hard not to be able to go. I am so tired of feeling useless. But this should not be about me, it should be about Kathy. She was such a strong woman. A single mother, raising 3 children mostly by herself. She was so generous and kind. She worked so hard and hard and hard….and she gave and gave and gave. This probably gave her more joy, but from my view I wish she had been able to take more time for her. She was just about to retire when she got sick. I know Kathy did have a good life, and celebrated life, but I also know she was looking forward to slowing down and just enjoying her grand children. Please don’t put off living until tomorrow. Kathy was one of the best people I knew. That sums it up pretty well.
I didn’t expect writing this post would make me feel better.